Like this:

How disappointing it was for me to read this article in the National Post. Even more disappointing for me were all the comments perpetuating myths about organ donation.

Even so, articles like this bring organ donation to the forefront, and encourage people to do two important things: 1. Register as an organ donor; 2. Tell your family that you have registered as an organ donor and that you want their support in the event you suffer life-threatening trauma.

No transplant doctor in Canada has ever gone against a family’s wishes despite a signed organ donor card.

Blair Bigham, Special to National Post | November 25, 2016

Toronto — When Heather Talbot saw a police cruiser park outside her home, she braced herself for terrible news. After explaining her 22-year-old son Jonathan was involved in a car crash, police officers rushed Talbot to the intensive care unit at Toronto’s Sunnybrook Hospital, where doctors told her he was brain dead.

“I remember wondering if they would ask about organ donation,” recalls Talbot, who was against the idea.

It wasn’t until a nurse asked about Jonathan’s own wishes that his sister Emily spoke up. The two had gotten their drivers licences together, and she recalled Jonathan signing the organ donor card that came with it.

“I wanted to respect his decision,” says Talbot.

Talbot came to accept her son’s wishes, but often, families feud over whether to respect previously declared wishes around organ donation.

Two months ago, in September, Gerald Neufeld donated a kidney to a person in need in British Columbia, closing the loop on the Paired Kidney Donation program that we had entered into, he as a donor and me as a recipient. This is the first time I have mentioned Gerald’s name in any of my blog posts. The transplant coordinators generally want to keep these matters confidential for the first several weeks following the actual transplant. Sadly, sometimes if direct donors and recipients find out about each other, the altruistic nature of the donation can become a bit weird. But, enough time has passed that I have been released from this constraint.

Gerald Neufeld, my donor in the Paired Kidney Donation program.

Rie Neufeld, Gerald’s wife and among many other things, caregiver following Gerald’s kidney donation surgery.

Before I go on, I want to mention once again another person in British Columbia, someone I had known for many years, who had also volunteered as a donor for the paired exchange program. Ultimately, I only need one kidney to thrive and therefore only one donor, and so this other friend did not become a donor. Nevertheless, I wish to thank him for his willingness, along with his wife for her support. The encouragement I received, the depth of emotion I felt whenever I spoke with him as he accompanied me on this journey across thousands of kilometres, will remain in my heart forever.

Back to Gerald. Gerald’s connections with me and Etsuko are perhaps not quite as old, but they are every bit as significant in a different way. We shared some years together as former missionaries in Japan. As with me and Etsuko, Gerald also met his wife Rie on the other side of the Pacific. And although we didn’t have a whole lot to do with each other at the time, several years earlier we even spent a year together as fellow students at Canadian Mennonite Bible College (now Canadian Mennonite University) in Winnipeg. Who would have thought that so many years later (we returned from living in Japan a final time in 2000) we would establish a new life-transforming connection like we have experienced in 2016.

In the caption below Rie’s picture, I mentioned that Rie was Gerald’s caregiver following his surgery. Although Gerald was discharged from the hospital in a timely manner, recovery is something that still takes a number of weeks before a return to work is possible. For that reason, Gerald received support from his employers, Emmanuel Mennonite Church in Abbotsford, BC, where he is music coordinator, and the Mennonite Japanese Christian Fellowship in Surrey, BC, where he serves as pastor.

Thank you, Gerald and Rie, thanks to your three children, and thank you to your church communities for all that you have done, not just for me, but also for raising awareness of the need for organ donation.

I will add a small note about my situation these days. Recovery from the blood clot in my right leg continues but I hope to have that fully resolved by December. Last week I went to the kidney clinic as I have been doing every two weeks for quite some time. After reviewing the results of my blood test, the nephrologist I saw that day pronounced me fit and said that he wanted to see me next in two months! And then he told me that he would have suggested three months except that he was concerned it would “freak (me) out.” It almost did. Wow. By then it will be just short of the six month anniversary since my transplant.

I really am making progress. This past Friday, Etsuko and I went to Sarnia (about an hour west of London, ON) for an overnight stay at a hotel and a very pleasant walk along the waterfront. Friday was apparently the last nice day before winter began to settle in, but one of the main reasons we went away on this little trip was because we had to burn up some Air Miles before they expired at the end of this year (yes, we are among the many Canadians forced to use our points whether we want to or not). It turned out to be a great day, and it was my first time away from home in two years without having to haul along a bunch of equipment and supplies for dialysis. What a sense of liberation that was.

So, lots of reasons to be thankful! But today I want to say I am mostly grateful for people like Gerald, people willing to be living donors, as well as those who support them. Not everyone is willing to be a living donor, or even if willing, able to take such a step because of health limitations, but today you can register as an organ and tissue donor following your death. Here is the URL that provides links to all of the provincial and territorial donor registration sites: Canadian Transplant Society. Please register and make a difference. Thank you.

A few days ago I reposted an article from the Washington Post written by Michael Poulson, who had regretted donated a kidney at age 18. Here is a “Letter to the Editor” from a living donor, Macey Henderson, who at age 24, donated a kidney to her 36-year-old cousin. To what might we attribute the difference in their attitudes?

When I was 24, I gave a kidney to my 36-year-old cousin who had been on dialysis for two years, and I have no regrets.

I respect Michael Poulson’s lifesaving kidney donation and his desire to better understand the risks of donating, but aspects of his article were misinformed.

As a research scientist who actively studies risk after living donation, I can report that data show that more than 95 percent of donors are satisfied with their donation decision.

I am not scared about the risk of kidney failure after donating. Mr. Poulson stated that we do not know how many people donate and how many of them develop kidney failure, but that was incorrect: There are national data sources for both of these, and research has been published based on almost 100,000 donors showing that kidney failure risk after donating is a tiny 0.3 percent.

I spend my days thinking not of my remaining kidney but of ways to design a better transplant system, in which live donor care is optimized.

Macey Henderson, Gaithersburg

The writer is a member of the national
transplant network (United Network for
Organ Sharing) Living Donor Committee.
The views expressed are her own.

Yesterday, Tuesday, October 4, I was at University Hospital for my regular nephrology clinic appointment. I mentioned to the doctor that I had been having some pain in my right leg for the last few weeks. I had put it down to excessive enthusiasm for walking following my surgery, which had also caused plantar fasciitis (now more or less resolved). Since it wasn’t subsiding, I wondered if it might be something else, like a blood clot. Well, in short order I was sent off to the Radiology department to have an ultrasound done.

The ultrasound technician was very thorough, working from the top of my leg to the bottom. She told me she spotted “something.” As a result, even though I had walked to radiology, I was now told I had to be taken back to nephrology in a wheelchair.

The upshot of all this: Yes, I have a blood clot. I will now be on daily injections of Fragmin ( a blood thinner) for the next three weeks and I will also be referred to the Thrombosis clinic for followup.

While I would have preferred to have learned that it was just a sore calf muscle, I am glad that the true cause of the pain was discovered and is now being treated. Even better, the doctor said I could continue to walk…so I walked home from the hospital, about 30 minutes.

In other matters, the clinic appointment was uneventful. I continue to make progress toward healing. Thank you for your continued support, good wishes and prayers.

This article was originally published in The Washington Post on October 2. This is not an article I am particularly fond of. A living donor now regrets the decision he made at age 18. As the recipient of a kidney via living donation, and knowing of at least a couple of people who were willing to donate a kidney anonymously (sometimes referred to as an undesignated or altruistic donation), it troubles me that Mr. Poulson now regrets his decision. It also troubles me that living donors may be putting their lives at risk beyond the immediate risk of the surgery itself. Even so, I think this is worth reading the perspective of a young living donor. Please note that this is article is particularly applicable to the US context.

You may or may not want to read the comments following the article, however. Some are disheartening and mean-spirited. Others are encouraging.

By Michael Poulson
When I was 18, my stepfather’s brother had been on dialysis for just over a year. He was thin, he exercised regularly and he seemingly was in perfect health, but inexplicably his kidneys began to fail him. Although I was just about to leave for college, I’d heard enough about the misery of dialysis to decide to get tested as a possible donor. In the back of my mind, I knew that the chances of our compatibility were incredibly low because we were not related by blood. Perhaps that made it easy for me to decide to get tested.

When we received the results, I was stunned to find out that he and I were a match. The transplant team gave me plenty of opportunities to back out of the donation, and it put me through countless evaluations, physical and psychological. Much of my family was steadfast against my becoming a donor. Looking back, who could blame them? Their son-grandson-nephew was going to undergo a major operation with no benefit to himself.

However, I continued to be confident in my choice. I relied on the one fact that would be repeated to me many times: “The rate of kidney failure in kidney donors is the same as the general population.” Why wouldn’t everyone donate a kidney, I wondered.

My mother was the only one to — reluctantly — support my decision. She accompanied me to San Francisco, where the surgery took place, and we settled in for the weeks that I would spend recovering. On the day of the surgery, anesthesia flowed into my arm and the world swiftly slipped away. Then, just as quickly, it seemed, I awoke, nauseated and confused. So much preparation for such a short nap. The anxiety I’d felt about the surgery was now gone — as was one of my kidneys.

An uneventful recovery came and went. I returned to college and resumed a normal life. Likewise, my step-uncle did very well and is living a full and healthy life, as is my donated kidney.

Michael Poulson regrets giving that kidney away. (University Photo)

Five years after the surgery, when I was 23 and getting ready to go to medical school, I began working in a research lab that was looking at kidney donors who had gone on to develop kidney failure. For that research, I talked to more than 100 such donors. In some cases, the remaining kidneys failed; in others, the organ became injured or developed cancer. The more I learned, the more nervous I became about the logic of my decision at age 18 to donate.

This weekend, Sunday, September 25, I will be walking in the London edition of the Kidney Walk, a fundraiser for the Kidney Foundation of Canada. Last year was the first time I participated in the Walk. In fact, I hadn’t been aware of it previously, despite 30+ years of living with kidney disease. This weekend, Friday, September 23, to be precise, will also mark eight weeks since I received my transplant.

And, as long as I am marking significant events, this past Monday, my friend Gerald donated one of his kidneys as part of the Paired Kidney Donation program run by Canadian Blood Services. His donation, although after my own surgery, made it possible for me to receive a new kidney. I had the pleasure of phoning him and his wife yesterday, Tuesday, the day after his surgery, and he sounded just fine! Praise God for his tremendous gift. I wouldn’t be where I am now without his generosity.

I’ve made a lot of progress in the last nearly eight weeks, but I still have a ways to go. I get tired very quickly, and a little bit of exertion brings out the sweat in buckets. On the positive side, walking is not that difficult. I’ve already walked more than half an hour at a time on several occasions, so I don’t anticipate any problems with the Kidney Walk. Again, I’ve made progress. Take a look at my vigorous steps two days after my surgery (video courtesy of my long-suffering wife, Etsuko):

My life during these three weeks can be summarized by the following: diminishing pain and discomfort, semi-sleepless nights compensated for by afternoon naps, an improved appetite, gradually increasing walks, frequent visits to the nephrology clinic, and reliance on others.

I’m happy to report that the discomfort and tiredness that are normal following major surgery, have subsided a great deal. Healing is happening. I am much more mobile. Even so, something as minor as a shower feels like a major event that tires me out quite thoroughly. Still, enough discomfort remains that I don’t sleep all that well at night yet, although in compensation, I have a nap in the afternoon. (Wow! What an exciting report, eh?)

On the plus side, my appetite is improving. At first, I really didn’t want to eat that much. Between the mandate to drink a lot of water and the residual pain from my surgery (the scars on my abdomen might be quite a topic of conversation the next time I go swimming; that, or the response will be hastily averted eyes) I wasn’t very hungry. That’s changing now, which is fortunate, because I was losing weight and probably not eating enough protein to support the healing that my body wanted to do.

Another factor in improving health is getting exercise, primarily in the form of walking. In the first week I was back home, I could barely put one foot in front of the other, and I was exhausted after a 10-minute walk. At this point, I’d say my gait looks more or less normal, albeit significantly slower than pre-surgery, and I’m able to walk up to 30 minutes at a time. I’ll walk outside during the early morning and the evening, but I’m behaving a bit like a vampire these days, actively hiding from the sun so as to keep my now cancer-susceptible skin as healthy as possible.

A big part of each week has been visits to the Nephrology (kidney specialists) clinic at University Hospital. It’s almost like a club in a way, as I was meeting other transplanted “outpatients,” some of whom had transplants in the same week that I had my own surgery. And since the time in the waiting room seems to go literally goes on for hours, we have gotten to know each other a bit. As it turns out, it seems quite likely that I have met my donor! A married couple had been coming in to the same clinics as I have been, and as we got to talking, I learned that she had received her new kidney on Wednesday, July 27, and that her husband had donated a kidney as part of the Paired Kidney Donation program on Friday, July 29, the same day as my surgery. He had donated his right kidney. I received a right kidney. His blood type is type O; mine is type O as well. I came into the hospital at 5:45 AM in order to avoid meeting the donor. He came into the hospital at 6:15 in order to avoid meeting the recipient. To my knowledge, there were no other kidney transplant surgeries that day. These things happen…. Interestingly, they had found out who her donor was as well, on the very day of her surgery. I will still send a thank you card “anonymously” via the hospital, but it’s quite something to look into the eyes of someone who gave you an organ out of his own body that is making a significant difference in your life.

Another graphic explaining one way that the Paired Kidney Donation program works.

As much as I have been getting good news at these clinic appointments, no one really likes to spend a lot of time at the hospital as a patient. Initially, I was going in twice a week. Yesterday marked the first appointment that was at the once per week level. I expected that to go on for a few more weeks, but the doctor who saw me said that I was doing so well I didn’t need to come in until two weeks later. If they’re happy, I’m happy.

None of this would be possible without a lot of help from a lot of people. At my first clinic appointment, Etsuko accompanied me the whole time, something like 4 1/2 hours. Since then I’ve gotten stronger, and we haven’t felt it necessary that she be with me through the whole appointment. She arranged for a number of people from church to pick me up after my appointment is done, so that she can make her way to work after dropping me off at about 7:30 in the morning. I’m grateful for rides from Enos K., Tim F., and Jake F. these last few weeks. Of course, Etsuko has had to pick up slack in other ways, too. I don’t have much energy to cook these days (I never realized how taxing it was to stand in front of the range until now), so after coming home from work, Etsuko makes supper, too, something that I have generally done. The same goes for any of the other household tasks that I have generally contributed to.

Our oldest daughter, Rika, even came in from Toronto one weekend to look after me while Etsuko and our son Aaron went down to Virginia with our third daughter, Aisha, to help her move in as she begins her Master of Architecture program at the University of Virginia. Rika, in addition to being a brilliant junior associate lawyer is also a pretty good cook. She even made kale tasty (my opinion about kale has been significantly warped shaped by comedian Jim Gaffigan’s rant about kale in his Obsessed video — here it is from Youtube!).

Aaron, currently living at home following the completion of his M.A. in History here at “Western” (University of Western Ontario) has also been helpful, often doing errands for me that I simply can’t accomplish these days. For instance, today, he picked up a prescription for me. Really, I don’t know what I’d do without the support of my family.

This photo’s a few years old now, but it’s the most recent “formal” photo we have.